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The fight for balance on the committee was an important one, and one we should revisit because it shows the imbalance of how ME is treated, misunderstood and the total lack of research and the difference between Long covid . This is where we keep fighting. Perfection as a target is forever...

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look...

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look...

This posts and following posts have been moved from the NICE guideline thread. That made me AngreMad. It is the case all over the UK that they just diagnose and then you self manage. Has anyone looked at this? I normally support families where I have to fight off intervention of the very nasty...

I think it was prewritten possibly hoping they would get their way but also to fight back if things went wrong for them. Over the years they have felt they could do what they like so why change now?

Sadly I would say she had no hand in writing the NHS website; I would say this was a preplanned release. Let us hope those who preplanned the release are the ones that get into trouble. FOI to whom authorised and asked for the writeup? I would also say that about most that attended. It is those...

I don't see the charities making any effort to go against the establishment otherwise they would have done this decades ago. As far as I understand the Law which is very limited ignorance or incompetence is no excuse. With the round Table, the release of the Association of Royal colleges and...

Needs to be a court challenge I would hope?

I would say thins is intentional. They will now start their changing the guidelines through the channels afforded to them by NICE. That is why Leng like Baker is stepping down or were they pushed. I would also not be surprised if Carol Black was given the position of NICE

thank you now going :thumbup:

I may have lost my place in this or not seen the link but the NHS have changed their input on NHS and CBT under the heading of treating and goes against NICE with and looks very much like GET is on there too Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - NHS (www.nhs.uk)

Now why did I not think of that Is it those that financed the guidelines?

We can only keep pointing out they they do not recognise PEM and the impact on what Baroness Finlay called disordered energy metabolism. If someone who has not worked with or researched ME can see issues then someone who has for decades is doing something wrong.

He needs to be reported for already going against the NICE guidelines and as he runs a centre that NICE say patients should go to and DO NO HARM most definitely needs a slap with a wet cold fish. I have one ready

If you watch the family court reform you can see it all happening

They are on a time limit due to JR but if they don't make a decision they hope they can run the JR out of time. Factor in the the NHS are lumping MUS (no research and a name that means nothing) and FND (now on NORD and so they will try to implement and ask NICE to make a guideline without any...

They should have a toolkit as they do with EDS hEDS this is one thing a RT event could be useful for as it has been used in the past as a training aid. If there was a toolkit it would be easier for YP to enable to fight the battles they face.

with all the funding she has she should be challenged on that ? If she cannot fully explain PEM she should be thrown out?

Will give that a go. I have a wicked witch cape somewhere will dig it out and get back to you

It is shocking what they can change subtle changes have big impacts.